Hi guys, hope everyone is getting through the winter ok and that you are all well!!
OK ... here goes. Looking back, my asthma has been getting progressively worse for the last 4 winters. I didn't go to see my GP because if it though, because I wasn't the typical ""noisy lungs"" asthmatic, so just got on with stuff. In fact when I moved house 5 years ago while at uni I saw them once to get asthma meds and went yearly for my flu jab, I'd ring if I needed more salbutamol. I ignored chest infections,, deciding that it was viral anyway so no point in wasting their time, it'd go away. I continued to ignore my symptoms getting worse and using more and more salbutamol. Carried on with the brown and blue. Looking back I really should have seen GP 4 years ago - I'd spent a few years on Seretide intermttently when I was younger.
Then about 18 months I got back from France afer having my best period in years - yes used my brown inhaler as I should, but didnt use my reliever at all. I returned to work in september and my lungs began to get worse and worse. I'd be at work and get to the point where I was so short of breath I couldnt talk., work would try to send me to the walk in/a&e near work, but I'd multidose and it'd get better. I also had back to back chest infections which obviously made breathing worse.
Then about this time last year (possibly longer) I was so poorly I ended up at A&E had nebs and steroids. Refused gases and cannulas as seriously needle phobic and went home. After that did g oand see GP who slowly increased treatment, referred me to my consultant and has been very concerned about how quickly my asthma goes really bad. I've been diagnosed as having severe and brittle asthma for about a year now. Lots of hospital admissions and time in resus, HDU and ICU, being ventilated (NIV) and needing lots of IV treatment to dort out frequent and horrendous attacks.
GRR! I am going through a *stable* period ... shock horor!! I've been out of hospital a whole 2 weeks and the asthma hasnt gone off on one!!! I'm sick of the steroids and their side effects so ignored my new consultants advice (now at a spcialist centre for severe and brittle asthma) to taper down very slowly. So Ive gone from 40mg pred to 10 in the space of about 10 days. Lungs have coped ok with it! a few days ago I forgot to take my 10mg in the morning as had to get up and go out, had a very physicaly demanding day and lungs werent happy, reurned home to some major structural issues at my house and a shed load of triggers, Lungs struggled, so I nebbed. Then in the early evening I realised I hadn't taken steroids so I took 5mg to cover adrenals.. I later (confirmed by medical team) went into adrenal crisis and was very poorly.
Now they're talking about adrenal insufficiency and seeing endo people etc. Asked some questions which they say suggested some adrenal insufficiency before the asthma went crazy. Also said that what happened the other day needs a 999 call because you can die very quickly.
Another, slightly pathetic, but really significant thing for me is that after talking to my asthma nurse today is that at the end of the month my care is going to transfer entirely from my secondary centre to my tertiary centre, meaning I will no longer be under her. I am really scared about this as I have such a good relationship with her, and she is responsible for me finally beginning to accept the diagnosis, telling me when I need to go to A&E and when I;ve been stupid for leaving it too late and actually keeping me alive .. lots by hamering home how important it is to go to A&E BEFORE attacks are life threatening.
So much information to process ... Don't even know where thats come from let alone how to deal with it?! I want it all to go away :'-(
If you've got this far, thank you so much for reading!! Laura xxx